May the Force be with you

Those of you who are part of or have been following the #JusticeforLB community and #107days campaign will know about the preventable death of Connor Sparrowhawk (LB) in an NHS assessment and treatment unit (ATU).  For those of you not familiar with the case, Connor was a young man with complex needs who needed respite during a period of crisis.  An independent report into Connor’s death found:

1.That Connor’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance.

The cost of ‘looking after’ Connor in this Unit was £3,500 a week.  That’s £182K a year.

Some of you will also be familiar with the case of Steven Neary, another young person with complex needs, who was deprived of his liberty and held in an ‘Positive Behaviour Unit’ against his father Mark’s and his own wishes for almost a year (Steven and Mark are now thankfully reunited).

Other young people like Josh Wills from Cornwall are not so lucky.  Josh has been placed in a Unit in Birmingham for the last 2 years (it was expected he would be there just 6 months).  Nicole Longhorn from York is in a hospital in Norwich, 4 hours travel away from her family.  Sign Josh and Nicole’s petitions to bring them home here and here.

The Challenging Behaviour Foundation note that 185 children and young people are also in similar situations, stuck in assessment and treatment units hundreds of miles away from their loved ones.


Chris Hatton recently wrote an excellent blogpost where he suggested that control of all the money currently spent on keeping people in these units and similar provisions – often out of county, excessively expensive and a significantly long way away from home - should be given to a Ninja Task Force that puts people with learning difficulties and families in charge.  

I responded very positively to this suggestion and having reflected on it for a few days, I am finding that I want to elaborate on it.  The ‘should be given’ is problematic for me. It conjures up a vision of well-meaning parents and other supporters (Davids) negotiating with Commissioners, service providers and government (Goliaths) for years to gain agreement for a transfer of power and resources.

Jenni Morris wrote that the organisations that currently govern provision and access to it are steeped in what she calls an ‘Apollo culture of order and rules that undermines self-determination’.  She cites Mark Neary’s current experiences (one of far too many) with so-called personalisation as an example of this.  Jenni states that ‘if we really want to bring about positive change, we have to do something fundamentally disruptive to existing systems.’

I am marrying up Chris’ Ninjas with Jenni’s ‘something fundamentally disruptive’ (for some reason that makes me think of the ‘Something wicked this way comes’ tune from Harry Potter).

I think there already IS a Ninja Task Force and I think the Force (may it be with you) could start to make changes by rolling out a model of service provision in one local authority area.

My elaboration on Chris’ proposal – taking on board what Jenni says about the ‘Apollo culture’ of those who govern access to resources - is not to wait for the Commissioners and service providers to give us the power, but to take it for ourselves.

The Force is made up of many knowledgeable and experienced people who are involved in the #JusticeforLB campaign – there are academics, parents, LD Nurses, people who use services and know what they want, people like myself who have already done their own thing in creating alternative provision, Psychologists, volunteers, sociologists, Counsellors, Psychotherapists and more……….

I reckon we are well connected, determined and resourceful enough to pick one local authority where there is currently a publicised campaign around a young person who has been moved to provision away from home.  We could choose the local authority where we have the most collective knowledge/access/contacts/experience/clout/all of the above and put together (and cost out) a proposal for provision to locate that young person within borough and close to the family.

The new provision could be funded by crowd funding/finding an anonymous donor/applying for funding ourselves/embarrassing the major charities (who – with notable exceptions - are currently mostly absent from this debate and certainly from action around it) into providing the funding/anything else people can think of.  The maximum needed would be anything less than what the out of county provision is costing (£182K per year if it is anything like the ATU where Connor was placed).  Once that is in place – and especially if it can be shown that the cost is significantly lower than out of county provision (for example, by families pooling resources to develop joint provision) - it would be indefensible for any Commissioner to refuse to commission it.  And if they tried, the Force is also well connected enough to judicially review the hell out of it.

Once it has been done in just one area, it is then a model that the Force could use to help parents to secure appropriate provision in other areas.

Lots has been written already about what we know about the sort of provision that is needed and how it can be developed in a collaborative way that puts the needs of the young person and family right at the heart of everything.  We already know what works……but we don’t have a system for securing it because we’re dependant on others to provide it.

I think it has to be a mix of a) ‘If you build it, they will come’ (showing that it can be done by doing it ourselves), b) challenging Commissioners by presenting a simple, logical argument that pulls the rug out from under theirs and c) using public opinion and (if necessary) the law to hold Commissioners to account to provide quality services locally.


Here is a back-of-a-fag-packet argument that could be put to Commissioners:

We (me and hubby) set up our own school for children with autism when it was clear that no provider was going to be able to give our child the quality of service that we wanted for him.  We didn’t want our son to go to a residential school miles away (which was the local authority’s answer when no local educational placement could be found).  We didn’t want our son to have to put up with sub-standard ‘one size fits all’ provision which would, because of its lack of true personalisation, actually have made things worse for him. 

The BODY method – Bugger Off and Do it Yourself.

It’s the best, most rewarding thing we ever did.  Its bloody hard work, especially when you have to constantly navigate the Triad of Impairments (Health, Education and Social Care) but my son (and 6 other young people currently educated at Bright Futures School) now have the best chance we can give them at attaining independence, making and maintaining friendships and relationships and finding and keeping meaningful employment.

We were just two scabby parents - imagine what the Force, with all its collective knowledge, experience, commitment, passion, connections and nous, could do.

#107days - our contribution in tribute to LB and in solidarity with his family

I first found out about LB and his family when Mark Neary posted on facebook with the awful news about Connor’s death.  Like other people, I was outraged and incredulous that this type of abject neglect could happen in a unit that was supposed to be staffed by people with expertise in helping young people like Connor who are at a crisis point in their lives.

Reading Connor and his family’s backstory and then following what has happened and is still happening in the aftermath of Connor’s preventable death, I’ve been awakened to the horrors of ATUs and moved to join the #JusticeforLB and #107days campaigns in order to do what I can to help.

Our school has an active PTA called ‘Friends of Bright Futures School’.  We run regular events and had scheduled a jewellery party to raise funds for FBFS.  When the #107days campaign was announced, we decided instead to use to the event to raise money towards the costs of legal representation at Connor’s inquest.  We also hope to raise awareness of Connor’s preventable death and the subsequent dehumanising treatment of his family by Southern Heath Trust by getting some coverage in our local paper.

I’ve written here some thoughts on what I think are the components of a quality service for young people with developmental difficulties who are at a crisis point in their lives.  Many others have made similar suggestions.  There have been conferences, academic papers, TV documentaries and public inquiries about what has gone wrong in the ATU system and more widely in services for people with learning difficulties…..but on a weekly basis we are still hearing of more young people and their families who have been subjected to neglect, bad practice and abuse.

It is heartening to see the groundswell of grassroots support for #JusticeforLB and it is my fervent hope that we can harness our ‘crowd-rage’ to bring about the change that is needed.

The sad death of Connor Sparrowhawk - some reflections

Connor was an 18 year old young man with autism, learning difficulties and epilepsy.  During a crisis, Connor had to go into Slade House, an NHS Assessment and Treatment Centre run by Southern Health NHS Trust where there were five patients and a minimum of four members of staff on duty 24 hours a day.  On 4 July 2013, Connor had an epileptic seizure and died in the bath.  He was unsupervised at the time.  Southern Health initially classified Connor’s death as resulting from ‘natural causes’ until an independent investigation found that his death was preventable.  Anyone who knows anything about epilepsy knows you don’t leave someone with epilepsy unsupervised in the bath. The Assessment and Treatment Centre had ‘expertise’ in epilepsy……yet Connor was left unsupervised in the bath.

Connor’s Mum Sara writes a blog about Connor, or Laughing Boy (LB), as she affectionately calls him.  This is a link to a 90 second slide show of his life .  You can read more about LB’s life, and now, unfortunately, his death and the dehumanising  treatment of his family in the aftermath of Connor’s death by Southern Health Trust.  

The Unit Connor was in when he died costs £3,500 per week.  That’s £182,000 a year.  An independent report into Connor’s death showed:

1. That Connor’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard Connor
5. That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of Connor’s epilepsy and his epilepsy was not considered as part of Connor’s risk assessment, in breach of NICE epilepsy guidance

Corporate manslaughter?

The independent report follows a highly critical CQC inspection published in December 2013 in which Slade House failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.

£182K a year…..and even then the blasted Trust couldn’t look after Connor properly.  

This stood out to me from an insightful blog by Chris Hatton: ‘The excerpts from the report ooze perhaps the central feature necessary to bystander apathy, diffusion of responsibility. Both within the unit but also crucially beyond it (how did LB end up in the position where the unit was the only option? What was the plan for what he was going to do after he left? Why were his family marginalised? Where were the Wizard of Ozian commissioners in all this?)……..no-one stood up and took responsibility for ensuring that LB could work towards the life he and his family wanted. The very quantity and range of professionals and organisations involved, far from showing the marvellousness of LB’s support, may have been a factor in his cruel lack of effective support when it really mattered.’

What will it take before families of children and young people with developmental difficulties get the quality of service they deserve?  I don’t know the answer to that but I do know I’m ready to stand up and be counted with Connor’s Mum and other supporters who want to a) see Southern Health brought to justice and b) bring about change to service provision for people with autism (and with or without learning difficulties).

I was struck, when reading through Sara's blog, by the part she wrote about LB wanting a girlfriend (tears are welling up now) and this being a possible contributory factor to his decline. The poor lad just wanted what we all want....and why wouldn't he? We all need to be connected to others, to feel valued and loved...and not just by our family who are going to love us unconditionally whatever.

When he needed connection the most….when he was vulnerable, anxious, confused about his future, needed help from people outside the family who could take the time to understand what was going on for him, the only place LB could go was a Unit with what the independent report describes as an ‘impoverished’ social environment and a culture of supporting (?) people with medication and restraint.

I woke up this morning wondering what ‘good provision’ would look like for young people with developmental difficulties in this situation.  It’s a bit of a jumble, but I think it would include elements of these 4 things:

Home from Home Care

This service offers parents and carers a true alternative when it comes to choosing services for their adult children. Established by parents, every aspect of the service is approached from the viewpoint of what is best for the individual, rather than what is necessarily best for the company.

Where others may compromise we don’t. If a room needs modifying, it will be done; if an individual’s needs require specialist staff training, it will be implemented; if an individual’s support needs change, they will be reassessed and a new support program devised.

If something unplanned happens, there is  a proactive approach. Staff learn from experience and take any necessary actions; everything is open and transparent whilst respecting the privacy of the individual and their rights.

These commitments make a difference to the lives of the people being supported, to their families, to the staff and to other organisations.

The unique, no-compromise approach values each individual and every aspect to their life, essential to that sense of feeling at home.

The very fact that parents set up this service gives me huge confidence in its potential to meet need and to care rather than caretake. 

Gentle Teaching

A way of intentionally creating a culture based on authentic, unconditional and reciprocal relationships.  No matter what.

We think about how our human presence feels to another person..... Does it make them feel safe? Do they feel loved or cared about by us? Do they feel able to care about us or show loving kindness to us? Are they feeling accepted and welcome enough to join in with us?

Here is a video explaining more about the approach. 

Integrative psychiatry 

Integrative psychiatry uses both conventional and complementary medicine remedies in the treatment of psychiatric conditions.  This means being attentive to the many dimensions that affect both distress and psychological wellness, including a person's physical, emotional, interpersonal, behavioral, nutritional, environmental and spiritual dimensions.  Metabolic testing (e.g. hormones, adrenals, neurotransmitters, thyroid, allergy) may be used to look at chemical imbalances in the body that may be contributing to emotional and/or physical dysregulation so that these can be corrected in order to optimise wellness.

Relationship Development Intervention (RDI)

RDI recognises that because of their different neurological wiring, people with autism and other developmental difficulties have problems coping with uncertainty and change.  This often causes high anxiety, resulting in flight, fight or freeze (withdrawal, aggression or collapse).  The unpredictability (ongoing change) that is a key feature of social interaction can also be very difficult.  RDI uses dyadic (pair) relationships to gradually expose people to increasing amounts of change and unpredictability in a way that actually supports them to develop their own competence in managing uncertainty: by using their partner as a point of reference to decide what to do when presented with uncertainty and by forming special memories of their own competence in managing uncertainty that they can use when presented with a similar uncertainty in the future.  This is actually how typically developing people learn, as babies, toddlers and youngsters, to cope with and (importantly) enjoy uncertainty and change….so RDI mirrors a natural process.  

Some of the earlier posts on this blog show me working with my son to do exactly this.  This blog  shows another Mum working with her son who has learning difficulties as well as autism.  RDI can be used with people on any part of the autism spectrum, at any age.   

So my melding of the above 4 components is not about locking people away and medicating them….or at least if they are medicated, due to crisis, it’s for a short time and within the context of a plan that seeks to get to the bottom of their crisis experience and get them off medication asap.    It’s about establishing a relationship of trust….where our young people feel safe, accepted and loved.  It’s about accepting that they have challenges, that they need specialised, sensitive and multi-faceted support to help them to work through those challenges so that they can achieve the best quality of life possible.  

If someone is struggling with the transition to adulthood…..developing an awareness that peers and siblings are starting to have romantic relationships and realising that this is going to be hard for them because of their differences……their need for connection is not going to disappear with medication or incarceration.

Look at the common threads running throughout each of the 4 examples above…..relationships, connection, the investment of time and understanding, trust.

Imagine if that had been available to Connor and his family. 

The #JusticeforLB campaign has been put together to try and draw attention to his preventable death, ensure that people know about him and that change occurs.  If you are on Twitter and wish to comment, please use #JusticeforLB. 

LB’s family is raising funds to cover the costs of legal representation at the inquest into his death.  Here is a link with further information on how you can help. 

 

 

The 'goal beneath the goal'

I am excited to be able to share with you some footage of Ben, one of our pupils at school, with kind permission from Ben himself and from his parents. 

Here is a 2 min clip of Ben before he started his placement at Bright Futures School.  This clip is from February 2012, with the white table in shot. 

 

Ben is hardly looking to me at all (social referencing) for the information in my facial expression that will help him to understand my thoughts and intentions. He is competent at doing the task but he is not emotionally connected to me.  I am having to talk a lot to ensure that he understands.  It doesn’t feel like there is much reciprocity in this clip and neither of us seems very comfortable.

In the second clip, I am working towards Ben being able to take more emotional responsibility for the interaction, including re-engaging me if I withdraw (e.g. if I was tired, lacking in enthusiasm etc).  In order to do this, I first want to make sure Ben is competent and comfortable with reading all my non-verbal communication so in this clip, I am continuing to isolate communication channels and work on each of them separately.  Here I am using prosody (communicative noises) as the main communication channel in order to continue to expand Ben’s ability to read the whole communication package when interacting.  This includes facial expression, gesture, body proximity as well as prosody, and of course, speech.  Most children with autism rely on the spoken word.  80% of communication is non-verbal, therefore they miss a lot of meaning!!

The non-verbal communication is what holds the ‘intention’ of the communication partner.  It holds the whole range of emotions that tell us what our communication partner is really thinking.  If we can’t ‘read’ non-verbal communication (NVC), we are going to have a lot of difficulty understanding other people.

Not only does Ben read my NVC, he actually uses it himself quite naturally and spontaneously….and his use of it is spot on J Compare this to the first clip and you’ll see how far he has come.

As you know, social referencing is also key to communication.  Here I wait for Ben to reference me before taking many of my actions and Ben reciprocates at different points by referencing me to ‘check in’ to see whether his own actions are on the right track.

In this clip (from last week), Ben is increasingly looking for my emotional reaction to things.  This means he is interested in my perspective and my views about what should or shouldn’t happen.  Taking on board other people’s perspectives and being able to adapt to them is what helps us become flexible in our thinking and therefore adaptive in our behaviour.

I am quite animated in my interactions with Ben because he is the sort of young person who responds well to this.  I wouldn't necessarily be the same with other pupils......it all depends on what is appropriate for them individually.

 

The clips:

Clip 1 I set up that I am going to use prosody.  There is no expectation for Ben to mirror this.

Clip 2 I start off using prosody

Clip 3 Cutting the butter - I give Ben the butter and wait.  He references (refs) around what to do with the butter and I use prosody to clarify.  He refs again around what to do when it’s on the scale, I use prosody again and B mirrors the sound I make to emphasise.  He figures out it’s too much and goes to get a knife

Clip 4 Checking the weight of the butter....I hesitate, Ben uses prosody, I re-test the scales, Ben uses prosody again with gesture and refs, I confirm.

Clip 5 Ben gets the bowls, refs and uses gesture to check if it’s what’s wanted – lovely use of referencing and gesture by Ben.  I use prosody to turn him down and then hold up the butter.  I look at the cooker as a clue which shows he also uses facial ‘eye pointing’ as a means of understanding another's communication (we need to melt the butter) and then Ben gets up to problem solve by getting a pan.  This is a great example of reciprocal non-verbal communication between the two of us that Ben would never have been able to do when he first started with us at Bright Futures.

Clip 6 Chocolate!  We scoff a naughty piece and there is some great reciprocal facial communication here.  Ben also starts to initiate looking for my emotional reaction/ perspective at 3:37 when he picks up the packet & makes a noise. 

I use prosody to set up a throwing rhythm.  I vary the rhythm and then let Ben lead.  He goes out of turn and I spotlight this, he laughs at his own mischief.  You can see him self-regulating around his cheekiness too, wiggling fingers, a little disconnected.

I let him know its ok for him to go and he goes. I vary the rhythm again and we share emotion about the piece getting stuck on the butter.  Just before this at 4:43 he is struggling to break the chocolate & he is expressing this non-verbally.  He doesn't look for my emotional reaction here, although he does while placing pieces back on the wrapper & I give a smile.

He is adding some great variations in this clip, showing his increase in flexibility and in initiating and accepting new ideas.  Variation (including looking at different options for how to do something) is key when using RDI.  Lots of other approaches recommend routine and structure.  Here we have a structure (I have set up or 'framed' this activity to work on key developmental goals, with specific complementary roles for each of us)....but within the framework there are plenty of opportunities for variation.  We're not rigidly following a set routine - we're improvising, elaborating on each other's ideas, adapting in the moment to our joint appraisal of what we can do together.  Because of this, Ben's ability to be flexible in other situations and other settings is improving. 

Clip 7 Ben has an idea (variation) re the eggs - I go with it.  We work together to separate the eggs. Ben gives me a nice gaze shift when doing this.  We have an accident on the second one as it doesn’t separate.  The third egg is also tricky but we manage it and share emotion around our success with 'egg juggling.'  This is a real 'we/together' moment!

Clip 8 Ben pours too much xylitol and I spotlight this.  He resolves it using gesture and facial expression.  His use of non-verbal communication here is excellent and again something he wouldn’t have done when he first started with us.

Compare the feeling of connectedness in this second compilation of clips to the first clip.  In the compilation, we are really having fun, working together as a team, able to accommodate each other's variations (and turn-downs) and there is just a significantly greater feeling of togetherness.  Our activity goal is to make buns, but the more important goal (the 'goal beneath the goal') is for me to use the secure emotional connection I have established with Ben and use it to work on key developmental milestones. 

Thank you RDI.

P.S. Anyone who has been following the story about unfounded allegations of Fabricated/Induced Illness being used against families of children with autism, look out for an article in the Mail on Sunday tomorrow.